Although Arnold Knutsen and I “met” virtually five years ago, we only first spoke on the phone recently when he called to share his story. He’s the eldest member of the online benzodiazepine support group we cohabitate. His posts in the group always reeked of desperation, and there was a palpable sense of urgency to his pursuit of a cure for his situation. It was clear he was suffering terribly and was terrified he would die like this.
In his younger years, Arnold worked on guided missiles, submarines and space shuttles, like the Apollo, as a technician and quality analyst for NASA. Now, at age 81, he resides in Florida with his wife of almost 62 years.
Arnold’s Lorazepam Prescription
In 2003, at age 66, Arnold fractured his skull falling backwards off a scooter. The hospitalist prescribed a two-week supply of lorazepam (Ativan), 1mg/day, with discharge instructions to follow up with a neurologist — instructions that would ultimately prove to significantly diminish his quality of life.
Unsuspecting, Arnold accepted nine-and-a-half years of “legacy prescriptions” for lorazepam from that neurology clinic — taking them as directed. Probably due to tolerance, an expected outcome of chronic benzodiazepine exposure, his dose was escalated over those years to 4 mg/day, and then eventually to 8 — the equivalent to 80 mg of Valium. The dose increases were never explained: “It was always just a quick, routine visit — here’s your refill, bye,” said Arnold.
Most prescribing guidelines recommend limiting benzodiazepines to two to four weeks, including the tapering off time. And, even though the 2019 Beers Criteria strongly recommends that benzodiazepines and Z-drugs are potentially inappropriate medications for use in older adults, a recent study reveals that seniors > 65 may be the most prevalently prescribed group.
Stopping Lorazepam
By the end of 2012, Arnold had blacked out and fallen several times, amassing three concussions and an artificial elbow and shoulder from the resultant fractures. Connecting the dots, Arnold requested to stop lorazepam. His neurologist abruptly switched him to 80mg of Valium and instructed him to halve his dose weekly until down to 10mg, then stop. Arnold developed shakes and other withdrawal symptoms, so the neurologist reinstated 5mg for a week — a four-week taper in total.
For patients like Arnold on a benzodiazepine equivalent to 80mg of Valium (e.g., 8mg Ativan, 4mg Klonopin, 4mg Xanax) long term, the Ashton Manual recommends a stepwise crossover to Valium — subbing out a fraction of the total day’s dose every week or two for the equivalent in Valium (as opposed to a direct switch of the entire dose at once) — followed by a 36- to 67-week taper (with the disclaimer that more sensitive patients may require longer).
Benzodiazepine-Induced Neurological Dysfunction & Protracted Withdrawal
Post-taper, Arnold experienced chest pains so severe he thought he had a heart attack as well as muscle tension and spasms that limited his ability to walk. As time progressed, he deteriorated even further. By 2015, he had stopped leaving his home: “It just kept getting worse. The tension is so bad now I can’t even barely get to the next room. And, probably one of my worst symptoms is: I stop when I’m trying to walk. It’s like if you have your car in neutral and you want to put it in gear, but it won’t go in gear.” In addition, Arnold also experiences head pressure, tinnitus, anxiety, panic attacks, crying spells, and difficulty falling asleep. “I also have no long-term memory at all; I don’t remember one day of my past life … so I have to ask people. And, people don’t understand. I don’t even understand how you can lose your long-term memory, but it says you can lose it from being on a benzodiazepine” he said. So for over six years now, Arnold has spent his days and nights confined to his living room chair. He feels like he weighs one thousand pounds and is being pushed into the chair. The silver lining? He can use his arms to pour cereal, brush his teeth and, with difficulty, comb his hair.
Arnold experienced none of these symptoms before lorazepam — describing himself in times past as “healthy as can be” — and he recalls no warnings about the potential for such outcomes at the time of initial prescription.
Medical Help Falls Short
In the first two years after withdrawing, Arnold consulted four different neurologists and tried multiple muscle relaxers for his symptoms — they either didn’t help or exacerbated things. And, one 1mg tablet of Klonopin in a reinstatement attempt caused Arnold to stiffen up so tight he couldn’t move at all. He hasn’t taken anything since and feels doctors misdiagnose him and don’t know how to help him. “Withdrawal lasts no more than a year, so it must be something else, is how the original neurologist puts it,” said Arnold. I asked Arnold if he’s convinced his symptoms resulted from benzodiazepines. He assuredly replied, “Oh yes!”
Protracted symptoms following benzodiazepine cessation were recognized back in 1991 by Dr. Heather Ashton. Dr. Malcolm Lader, who has published more than 100 papers on benzodiazepines, can be quoted saying, “Some of the [UK] tranquilizer groups can document people who still have symptoms ten years after stopping.” And, a recent paper about benzodiazepines in PAINWeek Journal concludes, “Now other problems are coming to the fore, long known to patients but under-recognized by healthcare providers. Among them is the experience of mechanistically perplexing protracted withdrawal symptoms. Although the exact explanation of this phenomenon needs to be elucidated, it is mechanistically plausible, and should be acknowledged and taken seriously by clinicians.” But, Dr, Stuart Shipko, a California psychiatrist, contends, “Protracted withdrawal needs a better name…Medicine does not recognize such a thing…Withdrawal is considered something that goes away within days or weeks of stopping a drug.” For those reasons, Shipko calls it “drug neurotoxicity.”
The Aftermath
Arnold’s 79-year-old wife has to do everything for him. She walks with him everywhere, even to the restroom so that he can use her shoulder for support. “She just finished mowing the lawn, which I should be doing,” he whispered into the phone — the guilt audible. Arnold believes the stress of caring for him has caused her two heart attacks. “I can tell this is horrible for her. Sometimes I get into these crying spells because I hurt so bad and it never lets up, and I can’t stand it. Finally, I break down and start balling, like a kid almost, and she comes over and puts her arms around me, and she’s crying too,” he said — their deep love perceptible.
Arnold offered the following thought to close our call: “Knowing what I know now, I never would’ve taken benzodiazepines — no way. They’re the worst thing that’s ever happened to people.” Reclined atop some pillows in the bed I’ve grown to hate, my own health similarly blighted from eight-plus years of the same lasting damage from benzodiazepines, I imagined Arnold imprisoned in his chair. I wondered if I would’ve rather lost my prime to this, as I had, or my golden years, like Arnold. Each had its downsides—with youth, career loss, financial hardship and a loss of reproductive years; with age, frailty and a limited time clock. Ugh, what a futile exercise — it’s all an absolute waste. There’s never a good time to endure this hell and, except in cases where benefits could greatly outweigh risks and patients are fully informed, it should be prevented at all costs.
My girlfriend is addicted to clandestinely made benzodiazepines, sold on the street as Xanax. This is San Francisco, California. 3 pills are sold for $10, and when she takes 1.5 pills, she is so far gone you can’t even communicate with her. I myself am an alcoholic, and I will have gran-mal seizures if I were to quit cold-turkey, but her addiction seems to far surpass mine in its potential for potentially lethal withdrawal.
I WISH WE COULD HAVE A CLASS ACTION LAWSUIT AGAINST THE PHARMA COMPANY. THAT WOULD WAKE THEM ALL UP, POSSIBLY. I JUST SEEM TO GET ANGRY AND MORE ANGRY THE MORE I READ ABOUT ALL THE HORRORS THEY HAVE AND ARE STILL CAUSING. A FEW PEOPLE HAVE SUED THE DOCTORS, THAT WAS LONG AND ARDUOUS.
Nicole
Gripping story.. great reporting as always .
This was difficult to read since I just underwent a rapid taper as an inpatient on the psychiatric floor of a “high ranking” hospital. I was prescribed Diazepam, (valium), Alprazolam (xanax) and other benzos for anxiety for 36 years. It is truly sobering to see someone else suffering needlessly but even moreso now that I realize that is my story too. Life before benzos was…well, a life. I’ll never get those years back, all I can hope for now is to spread awareness and maybe help others avoid these horrible, overprescribed, toxins and be spared the torture that so many live with just because they trusted their doctors. Look out, opioids, a much bigger crisis is unfolding. Benzodiazepines are detrimental as well as deadly. I implore everyone to NOT take these meds. FIND. ANOTHER. WAY.?
I wish more people would try acupressure, yoga, and CBD. I know he is very old but I would also recommend restorative yoga with a yoga therapist. I know yoga and acupuncture are expensive, yet one may do acupressure and yoga at home.
Hidden among the persistently damaged are the benzo damaged who years later resemble zombies. I don’t mean zombies as in horror films. I mean the zombies produced by exposure to the blowfish toxin. I won’t describe this because you can find information via internet search and in textbooks.
How long and in what state of health do these silent victims of miss-prescribing live? How do their caregivers find the strength to do what they do for decades after the benzo-injury?
Legal recourse seems unavailable even in the face of egregious prescribing- behavior. Now the question is: ” Why are smoking-gun cases rejected so universally?”
J.Hill
Well said!
This is beyond sad, it’s tragic. Yet this atrocity continues disabling, crippling many across not only our nation, but the world. Why is it legal in America to harm and murder for profit? When is this mental & physical torture of American’s ever going to end? You should see what they’re doing in jails & prisons when denying inmates their prescribed medications, it’s beyond horrific, it’s genocide. Many thanks to Arnold Knutsen’s for sharing his story. But I’m asking – when is anyone going to start listening?
I wonder if he has tried Acupuncture? It works well for withdrawals.
I’m off this crap for seven years in dec 2020….. this has taking my quality of life immensely and Arnold is not alone! see benzobuddies.org for help but k ow this can take years to heal your damaged brain!! was on 13 years never abused it! took as directed by my dr.
So sad to read about Arnold Knutsen and Nicole Lamberson’s problems, all caused by ill-educated physician’s. My husband was put on Benzos when he was 48 for daily headaches. That led to antidepressants, anti epileptic, antipsychotic medications. I began weaning him off the epileptic and antidepressants first when I began to notice strange little changes in his blood work which I read could be caused by certain drugs. No doctor told us, they always said lab work is good. I would get his actual results and see the little spots here and there that were too low or too high, but only a little bit but always consistently off from year to year. The antipsychotic went next, took two attempts. The last to go was the Benzo and took 6 months( this after 22 years of taking it). He was fine the first 8 months off, then odd symptoms began and got worse and worse, and of course he still had the headaches. Now nearly 3 years off and he is still getting worse. He had had episodes of chest pain and gone to ER for that numerous times while still on xanax, and has had then since being off but has NO CARDIAC ISSUES! It was all the Xanax. We spent the first 18 months going to numerous neurologists and many tests done, all negative. A full body EMG showed muscle fascilitations everywhere. One biopsy test showed not enough impulse from nerves to muscles, and no known cause. He was told that all serious disorders ruled out. By that time I had come across the Benzo problem so asked about that. EVERY neurologist said that there is no such thing.Doctors today are no different than the ones in the 1800’s who treated people with headaches and constipation with mercury and arsenic in pill forms. They killed a lot of people then and still are killing them, just using a new poison.